Bless Her Heart

Claira, Tom and I visited Dr. Kimberling last week for her yearly visit. It was very different this time because she seemed to understand a lot more. During the Echo, she laid very still and was very sober. While she was looking at the picture of her heart, the tech said ... "look, that's your happy heart".
After the Echo, another tech performed the EKG ... and she was wonderful! She let Claira put some of the stickers on her chest, and she took that job very seriously. After, she was in charge of taking all the stickers off ... she loved that!
The end result is ... she's a miracle! The Dr. said the scarring in her aorta is improving as she grows. He doesn't see any more invasive procedures in her future. There is still a murmur due to the small leak next to the patch, but she'll always have that. We'll continue yearly visits until she's 5, then we'll see!
When we got home we talked about her little heart, and I told her it was all better ... she said "Yeah! My heart's all beddur!"

Many of you may remember Claira's heart buddy Manning (click here for previous post) who has been waiting for a new heart for the past few months. He has had several ups and downs, including being taken off the heart list due to intestinal problems. He had been intubated since April due to complications from a heart cath, and his heart was failing. Manning and his family had been sent to St. Louis to await his new heart, which put even more financial strain on the family and limited their time spent together.
Manning received his new heart on September 27th, let me share their experience with you through his mother's words from the hospital CarePages website (this is lengthy, but worth the time) . . .

Posted Sep 27, 2008 7:03pm
At 11:54 AM James and I received a call from the transplant coordinator that their was a possible heart donor for Manning. A few hours later we received news that it looked like a good donor for Manning and the heart was accepted. We met with the heart surgeon at 4:30 PM and he explained to us the process of the heart transplant surgery and that he will be taken to the OR at 6:30 PM. The heart transplant surgery takes about 7-8 hours normally. Manning was just taken to the OR and we gave him kisses goodbye. James and I are currently waiting in the OR waiting room and the nurse will give us updats every 1-2 hours. Thank you for all your prayers and support. We needs your prayers currently as he has getting a big journey ahead of him.

Posted Sep 27, 2008 9:12pm
At 8:56 PM the OR nurse came in and reported that Manning's chest is now open and the donor heart is in the air. Dr. Ghandi is retreiving the donor heart and it is minutes away. Dr. Huddelston will be Manning's heart transplant surgeon and the only information he could tell us is that the donor heart came from a 2 yr old child. Please pray for the family of this child. We feel so blessed that they made the decision to help others during their time of suffering. That is an amazing gift to give. James and I are very emotional at this point.

Posted Sep 27, 2008 10:27pm
At 10:16 PM the OR nurse came in and informed us that Manning's heart is now out and they are getting ready to sew the new one in. The nurse also took some pictures for us of the heart that I will be posting. Please keep praying for Manning, the donor family and the medical staff. James and I have so many different feelings and emotions we can not even describe it.

Posted Sep 27, 2008 11:59pm
At 11:52 PM the OR nurse came in and reported that everything is going well and his new heart is beating. He is still on the heart bypass at this time but will be finishing up the surgery in 1 to 1 1/2 hours. The nurse will give us the final report in 1 - 2 hours. James and I are very anxious to see our baby.

Posted Sep 28, 2008 1:12am
At 1:01 AM the OR Nurse came in and reported that they are currently sewing his chest up. She says that Manning is doing good and the surgery went well. She says the doctor will be out to see us in about 30 minutes and we should get to see our precious baby in about 1 hour. It has been a long day but James and I are so ready to see Manning. Thank you all for all your thoughts and prayers. Please keep praying. This process is very involved and there is so much more to go through. We are just so grateful to the family that gave our child this opportunity to live his life.

Posted Sep 28, 2008 3:14am
At 1:45AM Dr. Huddelston came in and informed us that the transplant went well. He said that Manning had alot of scar tissue that made it a little challenging but is not uncommon. He also reported to us that with the cross matching Manning has developed antibodies in his blood that would increase chances of rejection so he will have to be on a machine that exchanges his plasma which is a more aggressive anti rejection treatment. There are some risks and concerns with this but it is not uncommon.The doctor says that the most critical time after transplant is the first 6-12 hours. Once we get over that hurdle then we will focus on getting him off the breathing tube which may be challenging since he has been on it for the past 5 months, decreasing his pain and sedation drugs which will be a challenge since he has been on so much and feeding him which may also be a challenge with his past issues. At 2:00 AM we were allowed to go back to the CICU to see our baby. He looked so good. His O2 sats are 100, his fingers, toes and lips were pink, and his eyes were open. He already looks like a different baby.Manning, James and I have all had a long day. Peyton was the first one we told about his brothers transplant this morning. He is so excited and is ready for us to all be home together. I was so happy to have James here with me because he was actually planning on leaving Sunday morning before we got the news. Everytthing worked out well. We are going to rest now and I will post a new update in the morning. Thank you all for your continued support, thoughts, and prayers.

Posted Sep 28, 2008 1:02pm
Manning looks really good. He does not have much swelling and he is really pink instead of blue. I keep looking at his skin because I am so amazed by his color. Many transplant moms have described to me that they have a feeling of giving birth all over again after they see their baby for the first time after transplant. I have to say I feel the same. He looks so good I just want to pick him up and hold him but of course I can't. Manning still has many struggels to overcome. James and I had to give consent for Manning to be placed on a pheresis machine that is used to take his plasma out and put new plasma in. He has to be on this machine because he has developed antibodies in his plasma that could cause him rejection issues. There are some risks to being on the machine but it would be a much greater risk if he rejects his new heart. This process takes 3 hours and he will have to do it for the next 5-7 days. His heart also went into junction rythem because of the swelling of the heart and now he is on a pacemaker.These two situations does not happen with all transplant patients but is not uncommon either. This morning since we have been here he is having some problems with low blood pressure that they are treating with medication. James and I are so happy but still very worried as Manning still has a long road ahead of him. Please continue to pray. Please remember Manning is in critical condition and is still struggeling to fight for his life.

Posted Sep 29, 2008 2:10pm
Overall Manning is doing well. He had his 2nd day of Pheresis and is tolerating it well so far. He is still on the Pace Maker that is on the outside of his body. They tried to take him off of it but his heart went back into junctional rythem. James and I just can't get over how pink he is. We keep looking at his hands and feet because they have color. They were able to decrease some meds and of course they have already started him on the antirejection meds. They have also turned down the settings on the vent. Manning is of course still on the ventilator and is paralized and sedated. They will try to lift the paralytic off today and see how he responds to it. He is running a bit of a temp so they have a cool rag on his head and have turned down the temp in his room. James and I just feel so happy and so thankful. When we received the call fron the transplant coordinator Saturaday morning we were just on our way back to our apartment to put up some groceries. I remember looking at the phone number and I knew the prefix was from St. Louis. I looked at the time and it was 11:54. She told us that we had a possible donor for Manning. I was in complete shock and it did not seem real. She told us to get to the hospital within 30 minutes. When we dropped our groceries off at the apartment we heard the church bells ringing from the Catherdral Basilica. James and I would often go to the Cathedral Basillica to pray for Manning to receive a heart. James said, do you hear those church bells? He said, Manning's getting his heart and a little angel is getting their wings.Now every time we hear church bells we will always think of the day Manning got his heart. We are so thankful to the amazing family who gave our child the gift of life.

A few days after his transplant, she was able to hold him for the first time in months. He is doing well today ... and will be going home soon.